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EAT => Food Allergies => Topic started by: ~Jen~ on March 13, 2011, 13:33:36 pm

Title: EDs and Mucous poo
Post by: ~Jen~ on March 13, 2011, 13:33:36 pm
Thank you!  Really appreciate any contacts or dieticians locally that might be able to help.

Well we are on Day 3 of the Neocate trial.  Not seeing much of any change.  She has only done one poo so far and it was still mucousy although I guess to be expected with only a few days?  I don't see a change in temperament and she has been refluxing quite bad in the morning and before bed.  One thing I have been thinking about is connecting her PPI med with the potential sensitivity to Sals.  IF she does have a sensitivity to Sals, the Prevacid we are taking contains Aspartame which is something we should be avoiding.  Could that be why her symptoms seem to peak right after we give it to her?  When I start the ED should I be taking her off the reflux meds to see when get to a baseline? Or can I just go by the nappies?  Do you think I should switch back to Zantac if she is potentially reacting to the Prevacid?

Sorry for all the questions, I am just on such a steep learning curve. Been spending all my time, reading up on the diet. Also, just ordered the Friendly Food book so I can get started.  I also have been thinking about DS's reaction to some solids we tried him on.  He would get HORRIBLE burning nappy rash (bloody and blisters) and I never could quite figure out what he was reacting to.  I cut most dairy out and then I also saw a connection with fruit - i.e. blueberries, strawberries and some citrus fruits./ All just based on trial and error with no systematic approach to it.  He doesn't really have other symptoms though.  I am wondering if it is all somehow tied to a slight sal sensitivity for him too? 
Title: EDs and Mucous poo
Post by: EloysH on March 14, 2011, 11:02:10 am
No worries!

I am really not sure about Aspartame - I will have to ask my failsafe friends.  However I know it is likely that you will be in trouble  if the reflux meds are stopped.  The reflux needs to be under control as much as possible, it is possible that all her symptoms are entirely food intolerance based but it is also very likely that she has plain old mechanical reflux and no amount of diet will fix that. For us, that was the case, K has both mechanical reflux and food intolerances, he needed his PPI to get rid of the acid so he had no pain in the throat, and the diet to ensure he had no pain in the tummy and abdomen  ::)  

 If you were to take her off the meds and her reflux pain was uncontrolled, then even if you reach a baseline of good poos and no wind, gas etc, she could still have considerable reflux pain and be very very unsettled.  We need to attack this from both angles to get a good result.

K is on Losec which is omeprazole made up as a compounded suspension with no flavouring, so I have not come across and sals issues in the meds.

Well,  would say a burnt bottom is a pretty strong reaction - if it is sals.  We never had burnt bottoms here, but it is common the sals act as a strong acid in the body. The theory is that these LO's don't have the enzymes required to metabolise the chemcails properly so it builds up in the body in toxic amounts and then the liver isn't able to excrete it fast enoguh. You are onto something with the berries.

You'll need to get the Elimination diet handbook to get started too. It can be bought from here:
http://www.sswahs.nsw.gov.au/rpa/allergy/resources/foodintol/handbook.cfm

I can get it for you if you have any troubles.

Dieticians: an email link:
http://www.fedupwithfoodadditives.info/factsheets/Factstart.htm

This page has a UK email group you can subscribe to, they might be able to find you a dietician:
http://www.fedupwithfoodadditives.info/factsheets/Factintroduction.htm

I can also ask my dieticina if they are willing to o'seas consults.  They do phone consults already... but they usually ask that you see the paediatric allergist in their practice first... but worth a shot, just let me know.

as for the neocate trial,  poos will have a long lag effect, so a better judge would be to look at any other symptoms whist she is on the neocate, poos can take many weeks to clear as it takes time for irritation of the gut to settle. 

I am going to split this thread now, so you can have two...
Title: Re: EDs and Mucous poo
Post by: ~Jen~ on March 14, 2011, 13:25:49 pm
If you do come across anything Aspartame I would definitely be curious. The Prevacid is strawberry flavour and I think (although really have no basis for my thinking) is the aspartame is a sweetner which might be linked to the flavouring of the tablet. There seems to be so much info out there about EDs and sensitivities to Sals so I'm not sure what is accurate and what is not. But I do think I came across something explaining that Aspartame is meant to be avoided due to high Sals. 

I do agree with you and appreciate you helping me think through the importance of keeping reflux under control.  Lately I feel like a dog chasing its tail!  Round and round we go.  They both seem so closely linked - you really have to attack from both sides.  I do think she has both mechanical reflux and the food intolerance issues.  So I think I will keep her on PPI for now while we finish the Neocate trial and figure out the next steps. At least that part of the equation is being addressed and I can focus on diet for now. 

Thank you for offering to help with the handbook. I actually sent an order form over the weekend from the website - but it says 2-3 weeks!  :o  So i will just work off the website and the support groups for now.  I also ordered the Friendly food book from amazon in the Uk.  We won't finish the Neocate trial for another several days so I guess that gives me a little time as well.   If any of the dieticians are willing to do an o'seas consult that would be great - I think it is going to be hard to find one here with as much experience.  I'm sure I can get started but it is clear that having further support from dietician is really important. 

As far as the poos go, that is where I am still really confused.  Our paed "encouraged" me to do this trial and wants to see if there is any improvement in a week.  he seems really focused on the poos - but there won't be much change in a week. He ultimately wants to decide whether she needs to go to a GI specialist.  My instinct is diet will fix this ultimately but I will see what he recommends. So what would be the other symptoms I should be looking at?  We are on Day 4 of Neocate and so far and she is definitely sleeping better  :) so that is a good sign.  But also still squirming just as much when I try and settle her for bedtime and naps.  It is almost like she is so restless she just can't calm herself down even in my arms when I hold her.  She relaxs then jolts and squirms, relaxes, jolts, squirms over and over. It is physically exhausting for me nevermind her! It is different then just OT restless though - I had that with DS and this is very different.  It seems like something is really hurting her.  She still exhibits the reflux symptoms early morning (around 6am) and going to bed (around 7-8pm) - I don't think her reflux is totally under control yet despite PPI but it is MUCH better than before meds.  What other symptoms do you think I should I be looking at?   

And one last thing (sorry!) I think you mentioned you ate sweet potatoes on the ED.  Are they mod sals? Do you think it is ok for me to continue eating them? They've always been a staple food for me and while giving everything else up I think it would be tough to cut them out.
Title: Re: EDs and Mucous poo
Post by: EloysH on March 14, 2011, 17:03:19 pm
I have asked my local failsafe forum about aspartame, they are a pretty knowledgeable bunch, some have been on the diet for years.

Will get back to you on poops thoughts.

Dieticians recommend a moderate chemical diet for breastfeeders. So go for the sweet potato.  It may take longer to reach baseline that way but will allow your sanity to be intact. I had to be careful to limit my moderates to one cup a day in the early days. Once he reached baseline for a few months, I was able to moderates liberally.
 

Title: Re: EDs and Mucous poo
Post by: ~*~Louisa~*~ on March 14, 2011, 20:26:16 pm
My middle daughter got burns on her bum from poop from too much dairy and sals when we eliminated dairy sals still caused it and now even half a teaspoon of ketchup causes burning poo (which if she leaks out of the nappy will burn legs or any other skin it touches)

Alyssa has had the same from again large amounts of dairy and again sals Zantac caused the last burnt bottom we had here

I dont know much about sals only what Eloise has really helped me with but the burnt bums we have had before
Title: Re: EDs and Mucous poo
Post by: ~Jen~ on March 14, 2011, 21:38:11 pm
Hi Louisa, That is really interesting.  It is all starting to come together now that I am learning more about sals.  I can't tell you how much time I spent trying to connect the foods and the burnt bums.  It drove all of us crazy.  I wish I knew about sals a year ago!  He doesn't seem to be super sensitive to them but if he has a bunch of dairy or alot of fruit, we get a burnt bum.  This makes me think I'm heading in the right direction with an ED for DD.   She just seems to be much more sensitive to it.  I'm learning too and thankfully Eloise has been a fantastic resource.

Eloise, thanks for asking the forum for me.  And soooo glad to hear the sweet potatoes can stay.  I'm trying to work out how do buy our meats for the week as it is not always feasible to get out to the shop during the day. If I buy a few cuts from the butcher and then freeze them when I get home, can I then just defrost as needed? I guess same thing with cooking in bulk, freeze and then just pull out from freezer as and when needed? This is going to be a big lifestyle change for me but thankfully DH supportive and we want to try to make it work.

At the end of Day 4 with Neocate, I have to say I saw a BIG improvement in her today.  She just seems so much more comfortable and easy to settle for sleep.  Much less squirmy and she even made it through 45mins for a few naps which NEVER happens!  HOpefully we see continued improvement and at end of the week our paed agrees it is a diet issue.
Title: Re: EDs and Mucous poo
Post by: ~*~Louisa~*~ on March 14, 2011, 21:57:57 pm
I know I feel the same way about DD#2 my dietion even put bad poo down to "toddler poo" and then Eloise posted about someones face being down to sals which looked exactly like dd's and we cut them right down and bam 4 months of bad poo cleared up in weeks! though a flair up when we gave her a burger when out and forgot to say no ketchup (slapping myself the next day)

god bless Eloise lol
Title: Re: EDs and Mucous poo
Post by: EloysH on March 15, 2011, 09:12:10 am
Louisa, you make me laugh   :P  Wow that;s pretty amazing about the small amount of  ketchup burning her bottom, I certinaly believe it though!

Jen,  sooo glad that she's getting better and her poops are getting better.  I was going to say look for less squirming, improvement in the frequency of refluxing, hiccups, wet burps, sleeping more soundly with less waking, less wind, shorter NW'ings, less fussing after a feed, and any improvement on the mucus side of things.

The meats was the hardest part for me to get used to. I was sooo glad when he passed the maine challenge and I could let up on all the resrictions with meat and cooking!  Although I am now quite fussy with meat and won't buy vacuum sealed anymore, I also freeze my meat straight away and won't let it sit in firdge thawed for more than a day, I don't think there is any good reason to load up on amines uncessarily.

Bascially, when buy your meat, ask the butcher is " was this cut from the carcass today?"   If yes, ok.  Then ask "have the carcasses been hanging less than 2 weeks" if yes that's ok too.  If it is a steak make sure to ask " is this meat aged"  if it is aged less than 2 weeks that's ok.  But once it is cut of the main carcass, it must be bought that day and frizen straight away.  Once you thaw, you must eat it that day.  Only thaw in the fridge.    You will get used to thawing your meats for that nights dinner in the morning, and your freezer will always be full! 

The other thing to do - and it saves alot of time is too cook your meals - for example make a whole lot of meat patties, cook them  then freeze sraight away.  Thaw a meals wirth and gently reheat on the pan for a meal.  I eat alot of mince pattties combo chicken & veal with diced leek, celery, carrot, (or any veges for that matter) lentils, cooked rice /quinoa mixed through.  They hold together really well when frozen and thawed, and even cooked then frozen, re heat nicely on the pan.  You can get away qwith frying things if they are coated in rice crumbs, then the meat won't be high in amines, as the crumb is getting browned, not the meat.

You can also gently roast your meats in the oven.  If it gets too brown, just don't eat the edges.

  CAN you PM me your email address, I can send you a 10 page recipe book downloaded from the FED UP food intolerance network as well as some other bits and bobs, I have a food challenge protocol - if or when you get to it.
Title: Re: EDs and Mucous poo
Post by: ~*~Louisa~*~ on March 15, 2011, 12:56:26 pm
Tomatos have always been the worse thing ever for her so i think cutting them made the tiny bit like 100% worse I looked through that link you posted and ketchup was 2.68 i think it was where everything else was under 0.50!
Title: Re: EDs and Mucous poo
Post by: ~Jen~ on March 15, 2011, 13:02:26 pm
I was going to ask you if she does have a sensitivity to sals will the symptoms be similar to the traditional food intol like dairy/soy etc.  She has so many textbook symptoms and despite cutting out dairy/soy/wheat/nuts/eggs, things weren't really improving.  When I go back to EBF, do you think the sals sensitivity could be the piece I was missing? Would a sensititivity to sals present symptoms like dairy/soy intols?  One of the symptoms that seems to be worse this week is her nose rubbing/congestion.  She can hardly breathe and that, more than the squirming, seems to be upsetting her sleep at the moment.  Is that another food intol symptom?

Thank you so much for the tips on meat and preparation.  Ironically, we just bought a new freezer with extra space which will really come in handy now.  ;)  

Title: Re: EDs and Mucous poo
Post by: ~Jen~ on March 15, 2011, 22:45:33 pm
Ugh, so I went to our local specialty butcher and asked about their meats and butcher told me that beef and lamb were all cut from carcasses 3 weeks prior!  I was sure this place would be the best place for me to go for our meats but doesn't seem like it will work. My only other choice is our supermarket butcher but I'm not holding my breathe on that one.  Now I'm not sure what to do about the whole amines/meat thing.  :-\   

I'm feeling really discouraged about the whole ED thing tonight. My mood is definitely being affected by eating so few foods. Hungry all day and I snapped at DS tonight which tells me that I'm pushing this a little too far. I felt awful afterwards.  I just find it hard to be so committed to something that is so challenging when I don't even know if it will solve DD;s problems.  :'(
Title: Re: EDs and Mucous poo
Post by: ~*~Louisa~*~ on March 16, 2011, 13:07:41 pm
The thing thats gotten me through my Elimination diets which have ended up sticking for the foreseeable future is the thought

I woud die for any of my children so cutting foods out well its nothing compaired to what i would do iykwim
Title: Re: EDs and Mucous poo
Post by: EloysH on March 17, 2011, 11:37:34 am
Annoying about the butcher! Do you guys eat alot of lamb?  Lamb is really safe for teh diet here, as they don't hang carcasses for long, they don't age them, usually after they are slaughtered they end up at the butchers within a week and are sold straight away.  Supermarket chicken is ok, if very fresh - check the dates for the freshest stuff.

The first 4 weeks on this ED are nothing but tough until you find some rhythm... it will all be very new and expect lots of mistakes.  I really couldn't get by without my Mum who has come once a week since the start to cook foods for my freezer.  I also had my Dad's partner cook things too at one point... and at another time I employed my neice one day a week to cook too!  I am just trying to stress here the burden of the cooking.

Yes you will be hungry at the start and really need to shop alot more often to keep fresh foods in the house.  Snacks are always a problem.

Going to neocate may save your sanity, and also your DH's!

I just joined to UK failsafe email group today and put a question out there about dieticians, lets see if anything comes back,  I think I put the link there for you below.

Haven't heard anything on the artificial sweetener yet, but its a synthetic chemical, a definate no no on the diet.  K reacts to addtivies and preservatives, I am sure he woudl react to that if it were in his meds. :-\

It does sound like you havea good case for a salicylate senstivity but you would never know for sure until you go through proper food challenges after a baseline has been reached on the diet.
Title: Re: EDs and Mucous poo
Post by: bug_blues70 on March 17, 2011, 18:07:01 pm
following along...
Title: Re: EDs and Mucous poo
Post by: ~Jen~ on April 18, 2011, 21:20:53 pm
Hi, Just a quick update after speaking with the UK based dietitian who is follows Failsafe.  Timing was perfect as things are hitting rock bottom for all of us.  She recommended taking Probiotics while continuing on the diet for hte next three weeks.  We talked through everything that has gone on with DD and she thinks that might be the missing piece of our puzzle especially because the mucous poos have not got better despite cutting so much out.  I'm starting tomorrow and again am hopeful but not getting my hopes up  ::)   

In my quest to find a baseline, I ate just chicken, rice (and various rice products) and pears for a few days.  while symptoms improved at first, they turned bad again. I added some low chemical fooods back in and after some serious pressure from DH tried 1 egg yesterday.  Sure enough she had a major reaction.  I'm really at the end of my rope. She is more squrimy, upset and unsettled than I've ever seen her.  I can only hope the probiotics will make some difference.  I'm so nervous because we are leaving for holiday in one week and I don't know how I'm going to keep such a restrictive diet while we are away  :-\
Title: Re: EDs and Mucous poo
Post by: ~*~Louisa~*~ on April 18, 2011, 21:54:26 pm
I'm all for breast feeding, but if theres missing links which you cant find it might be better to go onto FF Neocate, THOUGH its really up to you but if you slip up on holiday and theres a reaction your going to kick yourself and it will ruin your holiday

Alyssa we cut everything out except gluten, I dont eat alot anyway so there was never a really super obvious reaction to it but the dietion sid it would of been too

and tbh I think I would of been always trying to find everything and during the time we unfortunatly had Alyssa failing to thrive she is 6 months in a couple of weeks but is just into 3 mth clothes, and thats only in the last 3 weeks she started thriving on neocate

it now gives us near enough a clean slate to start weaning
Title: Re: EDs and Mucous poo
Post by: ~Jen~ on April 18, 2011, 22:43:24 pm
The formula thought has entered my mind more often than not the past week.  I worry about her health and mine as well tbh.  I can understand the decision to go to formula and if DD wasn't gaining weight I think I would have done it already.  But she is 4 mos old and starting to outgrow 6 mos size so she is doing ok in the weight department.  It is the squirming, jerking and cries of pain while settling for sleep that is breaking my heart and making me think maybe time to give up.  I can't help but feel like I am poisoning her  :'(

Holiday will be impossible to not have slip ups . I think if I just manage expectations, do the best I can while away, try the probiotics for a few weeks then I can decide what to do if no improvement.     
Title: Re: EDs and Mucous poo
Post by: EloysH on April 19, 2011, 00:45:21 am
I'm so sorry that you're not getting results.  Its heart wrenching for her and you - especially when you don't know that it even is helping.  Especially on so few foods  :-\    I really would be considering formula after a set amount of time has passed.  Kai really was better by 6-8 weeks on the diet, I was eating low to moderate chemical with no allergin foods.

I should probably tell you about the supplements that I have Kai on - prescribed by my naturopath.  She is quite knowledgeable in failsafe, food intolerances and allergy.  She says that the sensitive babies often don't have enough enzymes  required to metabolise the food chemicals, they get more as they mature, the chemicals tend to build up adn they need extra help with the load on their kidneys and liver.   So we give the following to assist him:

1 teaspoon glycine -immune system
3 tabs transfer factor - immune system
2 drops zinc - clearing out toxins
1/2 cap activated B6 - clearing out toxins
1/2 teaspoon probiotic

He has been on these for about 4 months and I really think its the key to him tolerating a higher amount of sals, he is now on tablespoons of high per day + unrestricted moderate.  He is also tolerating some buffalo yoghurt and goat milk.  
Title: Re: EDs and Mucous poo
Post by: ~Jen~ on April 19, 2011, 09:27:00 am
Hmm.. I'm very interested.  I've actually been trying to track down a naturopath in London with the same type of qualifications.  The other post you sent me a while back about how yours has really helped you tie it all together got me thinking that maybe that is something we should explore.  We finished with our osteo last week.  He was very happy with her progress and I do really believe he has made a big difference with her reflux.  I know the other piece of the equation, diet and food intols, is up to me though.  THat is where I am hoping a naturopath might be able to help?

On a separate note, does anyone know when it is best to be taking the probiotic? Before meals, after meals, AM or PM?
Title: Re: EDs and Mucous poo
Post by: EloysH on April 19, 2011, 11:09:47 am
Forgot to add that she prescribed a probiotic for K too.  She suggested on empty stomach 20 mins before meals however we give with meals, and she said that's ok.

I wonder if she just has gut damage now that needs to heal?  I  have heard that secondary lactose intolerance is also a by-prodcut of food intolerance - their gut gets damaged and then can't tolerate lactose.  It can also due to oversupply and fast letdown.  It might help to get her on lactease drops and see of her poos improve.   Good to rule out too.  I used to give them directly before every breastfeed for a while there.  If the poos don't improve in 24 hours then the lactose intolerance isn't an issue.  You can buy the drops here from a chemist.  One worth running past the dietician, naturopath or else a lactation consultant.  Everybody I spoke to about them seemed to think it was a good idea at the time.

Yeah I just saw our naturopath today.  It seems I have some major diet sorting out to do now that I am off the ED!  I actually wanted to ask her if she had any contacts in London, but forgot!  Will try to remember to email her.
Title: Re: EDs and Mucous poo
Post by: ~Jen~ on April 19, 2011, 12:46:14 pm
Oh, that would be great! Thank you - fingers crossed she does know someone.  But will continue searching in the meantime.

I definitely think there is some gut damage and I think she is reacting to things maybe she normally wouldn't be so so sensitive to.  I think my goal is to do the probiotics and keep the diet very simple, low chem, low oxalate and no major allergens for a few weeks to give it time to heal.  If after that, no improvement then I think I have to take a really hard look at switching her to formula.  If improvement though, will start doing challenges.

Interesting point on the lactose intolerance.  I had always ruled it out b/c I had read that lactose intolerance is usually green poo? She is always mustardy yellow - but if I am wrong on the green color then it is definitely worth a shot. I actually stopped in at our chemist down the road just now and they only have Lactease capsules for adults. I'm sure the bigger chemist in town will have the drops though if worth a try to rule it out. It can't hurt right?
Title: Re: EDs and Mucous poo
Post by: EloysH on April 20, 2011, 09:16:58 am
Yay, my naturopath has a colleague who has moved to London!  She has sent an email off tonight for the clinic details... lets hope its not too far away from you.

GOod luck for the next few weeks.  Obviously they will be some of the toughest in your life, but you can do it! Just think, when you go back to a normal low chemical diet, you will be thinking it's heaven!

Have you ever had her IGE levels tested?   

I don't think that there is any harm in taking the drops.    I don't think it HAS to be green. Its more about the frothy nature of the poos, wind, and also can come with mucus. If anything, they will assist with the digestion of the lactose in your milk. 

Title: Re: EDs and Mucous poo
Post by: ~Jen~ on April 20, 2011, 09:34:37 am
Yay! That is great news.. thank you for checking.  :-*

No, never had IGE levels tested. What is that>?

I will get the drops todaay and get started. You think we would know if it is helping in just 24hrs?


 
Title: Re: EDs and Mucous poo
Post by: EloysH on April 20, 2011, 09:50:41 am
Yep if you do every feed incl the night feeds- then you should notice a difference in the poos in 24 hours.  (As long as she poos 1-2 times a day).

I am pretty bad with my allergy theory, but basically it indicates whether the body is producing antibodies as a defence against foods, - so if your baby is reacting to something in his /her diet.   Whilst on the RPAH diet is it a little bit silly to do, the allergins should be present in the diet to give a good idea of how severly the immune system is reacting to the foods.   But we did it anyway (along with other bloods) and we did get info out of it - he came out just above the normal range, indicating that he was very sensitive - since at the time he was EBF and my diet didn't contain many allergin causing foods (just fish and eggs).    It was nice to have a medical confirmation, as sometimes I think I make up this diet and his symptoms in my head (well not really, but you do head miles sometimes  ::)
Title: Re: EDs and Mucous poo
Post by: huntersmummyinoz on April 20, 2011, 10:15:01 am
havent had time to read in depth sorry, but wondering what you decided with her reflux meds? just that the strawberry flavour in the prevacid would def be high in sals. (i would've thought you'd have pretty good grounds to get omeprazole suspension on NHS tho)  :-*
Title: Re: EDs and Mucous poo
Post by: ~Jen~ on April 20, 2011, 12:04:37 pm
We did end up switching from Prevacid to omeprazole last month. I was still learning about high sals back then but the artifical flavour didn't feel right to me nad I don't personally like aspartame - I don't have it myself so wasn't comfortable giving it to DD.  She is on omeprazole which seems to be working much better for her.  I don't sense she is reacting from it unlike prevacid.  I give her MUPs but do you think the suspension would be even safer for her?

Eloise, will let you know how we get on with the drops!
Title: Re: EDs and Mucous poo
Post by: huntersmummyinoz on April 21, 2011, 03:17:58 am
ok that's good. if she's fine on MUPS then i'd stick with it as it's so much easier to travel with (suspension must be kept cold at all times). my LOs both hated it and DS1 reacted badly to magnesium in it (very very rare) but there's actually prob less ingredients to deal with on MUPS than on suspension anyway.

good luck :-*

oh and on the meats thing... i suspected my LO was sensitive to sals so didnt restrict the amines completely like Elo did so i just stuck with meat from the butcher and supermarket and cooked it normally. i was prepared to do it if i didnt see symptoms settle quickly but i had a much happier boy 1 week after cutting very high sals and limiting high sals to one serve a day. he is super sensitive to sals (ie. can still only tolerate 5tsp moderate sals a day). must look into those supplements Elo mentioned. i was much more cautious giving him meat directly tho and was fussy with getting this as fresh as possible until he passed the amines challenge.
Title: Re: EDs and Mucous poo
Post by: ~Jen~ on May 01, 2011, 17:21:02 pm
Hi Eloise, Just wanted to see if you ever heard back about the London based naturopath?
Title: Re: EDs and Mucous poo
Post by: EloysH on May 01, 2011, 21:22:47 pm
No not yet!  Will follow it up.

Any closer to a baseline yet?
Title: Re: EDs and Mucous poo
Post by: EloysH on May 02, 2011, 10:59:18 am
Yay, I got her details.  I will email to you.

  If anyone else reading this thread is interested in a natruopath trained as a nutritionist for childrens and baby health as well as reproductive and fertility issues, PM me and I can email details to you.  :)

Title: Re: EDs and Mucous poo
Post by: ~Jen~ on May 08, 2011, 05:06:13 am
Hi, I emailed and called her last week but no response yet. Am hoping she was away and i get a response this week.  :-\

I am desparate to speak with someone. Still having major ups anddowns. Reflux flare again now too. DH pressuring for Neocate andnot sure how long I can keep fighting. Nothing I try seems to be working  ???
Title: Re: EDs and Mucous poo
Post by: EloysH on May 08, 2011, 09:42:01 am
Oh I am so sorry to hear that Jen  :-[  This is a very tough situation.  I really hope you get through to her soon.... so you can bounce all your worries and questions off someone.   I can imagine it wis getting extremely hard to  mentally keep up the diet with DH now wanting to go to neocate and her having a flare.

Does the paed want to do further investigations/testing?  If they don't signficantly improve on the higher doses of the PPI they usually suggest a swathe of tests.

 So do you think she reached a baseline of stability, and is now flaring or is her pain and smyptoms still uncontrolled?
I do know that many a sensitive bub thrive on the neocate. I have to admit alot more joy has come back into my life now that I am off the diet  ::)
Title: Re: EDs and Mucous poo
Post by: ~Jen~ on May 08, 2011, 11:04:31 am
Such a hard time right now with lots of tears over past 48hrs. The reflux flare has up'd our stress levels considerably as DD is back to hours of crying in the evening.  The PPI definitely was working for over a month now but something seems to be causing reflux to be aggrevated - maybe teeth?

I was re-reading this thread and came across the supplements you give to Kai..and I have been doing a lot of reading on healing baby's gut which all suggest similar types of things.  I think C would really benefit from the supplements as we arent doing any right now.  Waiting to speak with the naturopath...  as I would be afraid to give her anything without talking to someone first.  In the meantime, I am starting the lactase drops today just to rule it out.   Maybe it will help!

 
Title: Re: EDs and Mucous poo
Post by: EloysH on May 08, 2011, 11:42:58 am
many many ((hugs))  :-*

The supplements will help her body tolerate and clear out food chemicals in your milk. They will also support her immune system in the role it plays in toelrating and not reacting to foods.   I don't know the mechanics of it, but apparantly these bubs immune systems are stressed.   The supplements take about 4 weeks to kick in so it won't help you get over this blip unfortunately.

Buntybear and I also found this naturopath, she says alot of the same things that mine does about food allergies and intolerances:
http://purehealthclinic.co.uk/  Is this near you?


The stool sampling tests look like they are worth exploring.

If I were in your place I would go straight back to the paed and ask for a GI referral and maybe look at some further tests and so what advice options he/she has to offer with the latest flare.

Title: Re: EDs and Mucous poo
Post by: ~Jen~ on May 08, 2011, 14:43:39 pm
Thank you  :-*   I so appreciate the support.  DH and I are really at odds with this whole thing so feeling very alone right now.

Good news though - just got an email from the naturopath I contacted last week.  She can see us on thursday so I am really excited to have the consultation.  I also had a look at the other website and while this clinic is very far from where I live, might be worth exploring depending on outcome on Thursday.  Thank you for looking into other options. I was literally on the computer into 1AM last night searching for naturopaths  ::)

I also have on my 'to do' list to phone our GI on Monday.  We are due to see him this month and I want to move up the appt and talk about flare ups. We are on max dose of PPI for her weight so I want to see if he thinks further testing necessary. Last time he said no tests because her case seemed pretty textbook - but now I'm not so sure...

Title: Re: EDs and Mucous poo
Post by: EloysH on May 15, 2011, 12:39:28 pm
How did the appt go?
Title: Re: EDs and Mucous poo
Post by: ~Jen~ on May 16, 2011, 20:32:07 pm
Hi, It went really well.  She was great and had lots of really helpful suggestions.  She has me starting on supplements - vitamins, digestive enzymes and a different probiotic.  She is mostly leaving the diet stuff up to me.  But encouraging me to do challenges quickly to add more foods to my diet.  We both suspect leaky gut but before including remedies for it, we are going to do the basic supplements for a week or two to see if any improvement. 

We are starting to see some more normal poos which is such a victory.  but then we always go back to mucous/. So getting closer but not there yet.  I've cut out coffee and sugar which seem to have helped but something is still getting her  :-\ .  We are seeing the GI on Friday do you thihk I should be pushing for tests? The thing is her reflux is under control for the most part - it is the lower gut that I just can't figure out  :-\
Title: Re: EDs and Mucous poo
Post by: EloysH on May 19, 2011, 11:44:48 am
Great news that she was helpful and you have a way forward  :D